Epilepsy & Autism

Preparing for EEG, Education & Care Needs

Epilepsy is a condition that affects individuals in the neurotypical / general population as well as the autistic population. There is a significantly higher risk of epilepsy for autistic individuals, particularly for those with higher range of impairments. Scientific researches have reported that while epilepsy occurs in 1-2 per cent of the general population, nearly one-third of people with autism have epilepsy seizures (source: Autism Speaks). Recent epidemiological studies peg it at 39 per cent and mention that the prevalence of this condition is more among those autistics who are non-verbal or have a low verbal score. Among the known causes for epilepsy are developmental disabilities, peri natal insults (injury to the brain while developing in the mother’s womb) and genetic factors.

What is Epilepsy?

Electrical activity is happening in our brains all the time, that is how different parts of the brain and cells in the brain transmit messages to each other and we function. When there is a sudden burst of intense electrical activity in the brain, the affected person has seizures, also known as epileptic fits or attacks. The result is a temporary disruption in the way the brain normally functions and the brain’s messages all become mixed up. What happens during a seizure depends on which area / areas of the brain is affected. Seizures usually last from a few seconds to several minutes.

After a seizure, the affected person’s body and brain will usually return to the normal. There are many types of seizures and it is important to understand them to report the semiology accurately to the doctors. Though most seizures can be treated with medicines, some intractable epilepsies are referred for surgeries. In certain situations, spontaneous remission in epilepsy can happen, when the person becomes seizure free completely and the treatment can stop. This decision is taken by Specialist doctors. However, in the autistic population there is no evidence to suggest remission. A child can be seizure free for several years and then seizures can return sometimes in a cluster outbreak. Epilepsy is treated with Anti-Epileptic Drugs (AEDs) to prevent occurrence of seizures. Feedback from parent, carer, blood test reports, scans and the doctor’s prescription are vital in understanding the child’s epilepsy type. Autistic children with co-occurring epilepsy require additional care and support.

For most, seizures become well controlled (they still have epilepsy but the medication stops the seizures) and so it has little impact on them. For others, seizures may take longer to be controlled or may not respond to treatment. Epilepsy might have a greater impact on them in their education and daily life.

When does one go for a diagnosis & how is Epilepsy detected?

There are some characteristics associated with autism which can be confused with signs of seizures, such as staring or repetitive movements. However, if an autistic child stares without responding or does short, rhythmic movements like repeatedly fidgeting with clothes, shows uncontrolled aggression, becomes unusually clingy and has major sleep disorders, the parent must see a specialist. Even a slight concern should always be checked out. Being autistic can make it harder to explain experiences and sensations (strange taste in the mouth, blurred vision) to others, so parents and carers have to be extra cautious and vigilant.

Generally, epilepsy is only diagnosed after the person has had more than one seizure. Children who have had febrile seizures have a higher chance of developing epilepsy. It is detected through an Electroencephalogram or EEG. MRI scans are required to be done. These are the essential tests. Specialists may ask for certain investigations to rule out autoimmune factors, profiling of urinary organic acids, and complete blood panel tests. Some specialists may ask for some genetic tests like Chromosomal Microarray Analysis and Whole Exome Sequencing. The decision is taken by the specialists based on the nature of the epilepsy.

Preparing for an Electroencephalogram (EEG)

Autistic children have a narrow range of facial expressions or no expressions at all, even when experiencing a strong emotion or discomfort, this is a part of their social communication deficit profile. An EEG test creates possibilities of fear, anxiety, intolerance and there is a high probability of the child not co-operating, taking off electrodes or having a meltdown. Therefore, any EEG appointment has to be approached with full preparation with parents and caregivers as participants. The following tips maybe considered:

·      Checking out the hospital or clinic venue where the EEG is to be conducted is important. Detailed preparation is required because the hospital / clinic sensory environment is new; the input of light, sounds, touch and smell is different from what the child is usually exposed to. This maybe a small matter for neurotypical people but are very meaningful for autistics.

·      Waiting is stressful for the autistic child, request priority. Hospitals have an ethical duty to comply.

·      During the EEG procedure, the parent must be present at every step. Their role includes helping the child sit calmly, providing them with rewards, toys of their interests and keeping their hands busy so that the child does not pull the electrodes.

·      Many medical personnel who interact with autistic children during EEG procedure may have little experience with autism and not know what to expect. The parent must brief the practitioner in detail and be at hand to assist in getting the child’s co-operation. A good involvement of the parent will make the procedure safe and successful.

·      Since autistic children engage in repetitive motor movements, they maybe given flip toys to distract them or absorb their attention in their special attachments and interests. Those children who are verbal and use repetitive language, their queries need repeated answering in a reassuring manner, instead of asking them to be quiet.

·      Autistic children respond well to visuals, this maybe used instead of auditory instructions. If their cognition level permits a visual card strip, using the social story method maybe used for 2-3 days before and the EEG maybe presented as an outing and a visit to the clinic / hospital instead of making it a stressful event. Preferred snacks are to be carried.

·      Carry the Anti-Epilepsy Drugs (AEDs) medications of the child, sometimes EEG takes long and the child should not miss his dosage. At times, the doctors may ask for AEDs to be withdrawn to provoke a seizure for purpose of recording it as Video EEG (VEEG). The parent should trust medical advice on this front.

·      In instances where the the EEG is performed under sedation, special care has to be taken for the child. The parent and care-givers have to show extraordinary level of dedication and patience.

·      The parent should have an assessment if the child is going to respond with aggressive or challenging behaviour like hitting, kicking or biting. A calm voice and reassuring visage should be maintained when the child is reacting aggressively. The parent should initiate with active engagement or distraction while the EEG setup is being done under such a circumstance. 

·      After EEG, the child has to go home and his/her hair washed off completely off the glue. Give the child his comfort food, served well and favourite toy to make him at ease. 

·      Reference supports for parents:  Parents may look at these links to understand the EEG procedures

www.multicare.org/mary-bridge-video-eeg www.youtube.com/watch?v=NSE4qbluUxl  

How does co-occurring Epilepsy impact Learning?

Co-occurring Epilepsy leads to breaks in learning cycles. There is immense fatigue and capacity building has to be long drawn and implemented at a mellowed pace. Following difficulties maybe encountered:

·      New cognitive skills will require to be delivered in tiny bits and practiced for longer time repeatedly.

·      Coordination maybe impacted and has to be structured back again slowly.

·      The child will have problems in staying attentive.

·      Social exclusion concerns are there because epileptic phases mean time-off from school.

·      The caregiving parent’s mental health is very important as the parent may feel the strain since the child loses out on days of learning. However, the parent must remember that the child is in a fragile state of health and will recover once the seizure cycle subsides or is controlled and eliminated. Performance stress on the child in such a condition can increase the risk of seizures.

·      Some children can have epileptic activity in the brain when the seizure cycle is active and a full paced learning timetable may cause stress and trigger a seizure. This usually manifests in having problems with memory and staying focused on tasks for a long time.

Living with Epilepsy & Managing Wellbeing

Epilepsy affects not only physical health but also emotional well-being, confidence, mood and quality of life. The parent-carer is also under tremendous strain. Both the child and the parent’s well-being are thus a matter of concern. Coping with caregiving is not an easy feat. It is a big sphere of multi-tasking: technical tasks such as dealing with medical dosages and prescriptions, working with professionals involved in the child’s health or attendants engaged in the child’s care, emotional support for the child, and adapting to the child’s changing needs. Thus, being a carer can be exhausting. It is important for the parent-carer to take some self-time off, find balance and stability in personal and professional life. Support networks for such parents is essential from family, friends, school and health providers.

In Conclusion

The learning trajectories of autistic students with co-occurring epilepsy has to be maintained and their quality of life sustained. Their curriculum have to be adapted as per their medical needs and they are to be geared up so that they can fully participate in learning, play, social activities and leisure.

……to be contd. Next week, I write on types of seizures, safety guidance and role of schools in integrating treatment requirements with IEPs of autistic students with co-occurring epilepsy.